Alzheimer’s Disease and Family Adaptation

Tina N. Hatton

September 27, 2010

HCA 333: Introduction to Long-Term Care

Dr. Cynthia White

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Introduction

Alzheimer’s disease (AD) is a progressively degenerative, mental disorder. Since many

of those suffering with AD live in the homes of their family, their families must learn to adapt to

this disease in order to care for their loved ones. In this paper will define Alzheimer’s disease,

identify those who are impacted, explain how they are affected, and give the importance of

family member adaptation to this disease.

Definition

Alzheimer’s disease is a common cause of dementia in elderly people. Though it is not

considered a normal part of aging, for those affected, it diminishes their short-term memory in its

beginning stages (www.nia.nih.gov). AD is an irreversible and progressive brain disease that

eventually prevents one of having the ability of carrying out tasks of daily living.

AD is named after Dr. Alois Alzheimer, who in 1906, studied brain tissue of a woman

who had died of an unknown mental illness (www.nia.nih.gov). Subsequently, Dr. Alzheimer

found abnormal clumps and tangled bundles of that were later found to be the signature marks of

AD (www.nia.nih.gov). It was also discovered that the loss of connections between nerve cells

in the brain was also a marker of AD (www.nia.nih.gov).

It is unknown as to the exact cause of AD but evidence has shown that damage to the

brain begins as early as twenty years before the actual signs of forgetfulness begins

(www.nia.nih.gov). As the brain begins to lose connections between nerve cells, the nerve cells
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die. As AD progresses, the damage to the brain is wider spread. By the time AD reaches its

final stage, the brain tissue has noticeably shrunk (www.nia.nih.gov).

Some of the early signs of AD could be as simple as bad judgment concerning finances or

the repeating of stories and questions (Pshsorg.com, 2010). Other signs of AD are forgetting the

month and year or having difficulty remembering appointments or forgetting to take medications

at the same time everyday. Understanding AD leads the way to grasping who is impacted by this

mentally crippling disease.

Those Impacted

AD is the most common type of disease affecting the elderly today. In fact, it is

estimated that nearly four million elderly people in the U.S. today are suffering from this disease

(California Registry, 1995-2005). It is believed that this number will continue to increase. It is

expected that by the year 2030, the elderly population age 65 and older will grow to about 72

million and those with AD will double at every five year interval (www.nia.nih.gov).

While the elderly population will, with no doubt, be impacted by AD, there is one other

group that will also feel the restraints of AD. Friends and family members will also be impacted.

These are the people who will most likely be caring for their loved one while on this emotional

roller-coaster of AD. While AD affects the daily lives of those elderly diagnosed, it will most

assuredly target their loved ones as they find themselves learning to cope with the ups and downs

of AD and the way it affects their loved ones. It is important to understand who is impacted by

AD because it gives light as to how they are impacted.

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The Impact

As we have learned, both the elderly and their loved ones are impacted by AD. Those

elderly who are diagnosed with AD will begin to exhibit signs of depression. They will begin to

withdraw from normal activities such as going to the grocery store or social events. As their

memory progressively worsens, those with AD lose the sense of dates and times of the day.

Their safety becomes more and more at risk, and they begin to become more agitated with the

loss of their independence (Russell, Benedictis, & Barston, 2007). They also begin to experience

sleeping problems. This is caused because their sleep-wake cycle becomes reversed (Mayo

Clinic, 2010). The realization is that family members are just as impacted as their loved ones by

AD.

Family members or friends are often the first to notice changes in their loved ones and

their behavior. Once diagnosed, the family is confronted with the high costs of caring with a

loved one diagnosed with AD. To cut down on these care costs and boost the quality of care for

their loved one, family members often care for them in the home. They are asked to learn as

much as possible about AD maintain the quality of life of their loved one and become their

support system as they meet the future challenges of AD (WebMD, 2009). The family member

is asked to make changes in his life to meet the needs of his loved one. He is asked to discuss

such things as living wills, durable power of attorney, and the importance of DNRs with his

loved one before the disease progresses.

One of the greatest impacts on family members concerning the care of a loved one with

AD is emotional response. They will often experience depression and anxiety, anger, guilt and
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even uncertainty. In experiencing depression and anxiety the family member may stop engaging

in social activities (Northwestern University, 2002). They often find themselves angry with their

loved one when the behavior of the loved one becomes irritating. The family member may feel

guilty over arguments that were had in the past. Family members may also find themselves

uncertain as to how they will feel about their loved one as the disease progresses. It is important

for family members to understand that these feelings are normal and that it is okay to reach out

for help.

These family members will experience role changes. Over a time of many years, family

members become used to fulfilling their independent roles within their relationships.

Grandparents may have the role of being the source of social gatherings, and a husband may be

in the role of handling financial responsibilities, and children may always expect their parents to

be there for advice (Northwestern University, 2002). Family members, as well as their loved

ones may experience a sense of loss with the impact of AD. Intimacy may become also become

and issue.

With role changes due to AD, there also comes a problem with social situations. Family

members may feel embarrassed. They find themselves covering up for their loved one suffering

with AD (Northwestern University, 2002). Family members feel isolated because they are trying

to avoid placing their loved one in uncomfortable social situations. To keep the loved one from

being placed in stressful social situations, loved ones may stop engaging in them as well

(Northwestern University, 2002). With family members who are accepting responsibility of care
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of a loved one suffering with AD, they must understand the impact of this disease. They must

also understand it is just as important to understand the importance of adaptation.

Importance of Adaptation

We all learn how to adapt to new situations. Things like adapting to a new life of

marriage, the birth of a child or the requirements of a new job come natural to us because they

are gradual changes that we have come to expect. These are expected changes in our lives. With

AD, we as family members may not always know what to expect, because everyday brings

something new. No two days will ever be alike with AD, and that is why it is so important for

family members to understand the importance of learning how to adapt to the day to day

experiences of AD.

Once a family member has taken on the responsibility of caring for his loved one with

AD, he must be willing to adapt and make safety alterations to his home. The first thing to do is

in ensure the entrance and exits to the home are accessible to their loved one. This may mean

installing hand rails, ramps or even repairing steps (WebMD, 2007).

The living area must also meet safety measures for AD patients. Doors and windows

must be locked and accessible to the family members, but not as easily recognized by the AD

patient. As time progresses with AD, patients may leave the home and not know how to get

back. Telephones with small buttons may need to be changed to those with larger buttons to

make for easy dialing, and televisions must be easy to operate (WebMD, 2007).
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In the kitchen, faucets may need to be changed to levers to make them easier to turn on

and pots and pans should be easily reachable. Sharp objects like knives may need to be stored in

other areas. Due to the risk of kitchen fires with AD patients, it is important to remember to

keep anything flammable away from the stove (WebMD, 2007).

Bedrooms may also need altering, in order to adapt to the needs of a loved one with AD.

Phones must be within reach, and a light must be accessible from the bed (WebMD, 2007).

Trapeze bars or electric beds may be necessary for the loved one to get out of bed safely

(WebMD, 2007).

The bathroom is most likely one of the most important rooms of a home that must be

adapted to the needs of an AD patient. Grab bars may be needed for him to get out of the tub

safely. Any rugs need to be removed and nonskid mats should be placed in the tub (WebMD,

2007).

In general, through out the house there should be fully operational smoke and carbon

monoxide detectors (WebMD, 2007). Water heaters should be set to low to prevent burns. Most

importantly, medications must be locked up to prevent your AD loved one from overdosing

(WebMD, 2007). Safety is an important adaptation, but promoting comfort is just as important

when caring for a loved one with AD.

Patient needs change as AD progresses. It is then that family members must learn to

adapt through the adjustment of their communication styles. In the beginning the family member

may experience that their loved one is in denial of having AD and must find ways of educating

them on what is going to happen and still find a way of comforting them at the same time
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(HelpGuide.org, 2007). As the disease progresses, the family member will have to adapt to

handling aggressive and even paranoid behaviors in order to calm their loved one down

(HelpGuide.org, 2007). In the end, the family member must be able to relate to the dying

process of his loved one and provide compassion (HelpGuide.org, 2007).

Adapting to the idea of scheduling everything in the life of an AD patient can be

burdensome, but at the same time it provides comfort. Telling your loved one his granddaughter

will be visiting on Saturday, will give him something to plan for and look forward to, even if he

does not know her when she visits (HelpGuide.org, 2007). Setting up daily routines like

mealtimes and walks are important in adapting to the needs of the loved one. While it is

important to care for your loved one it is just as important to take care of yourself.

The greatest adaptation to caring for someone with AD is finding ways to keep from

becoming burned out. Learning about AD is important because it aids in the understanding of

what challenges and changes to expect in a loved one. This allows one to set realistic goals as

the caregiver and for the loved one suffering with AD. Never put your life as a caregiver on

hold, as hard as that may sound. Adapting to the idea of taking time for self may feel selfish, but

understand there is no harm in asking other family members to help out (WebMD, 2009).

Having someone to talk to, often times lessons the burdens of the caregiver. It provides support

and comfort for the caregiver.

Perhaps, the hardest of adaptations, is calling in the Calvary. It may seem that the family

member feels he has given up all hope when he places his loved one in a long-term care facility.

Utilizing other options for AD care is okay. This does not mean that the family member has lost
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love for his loved one. It simply means he cares enough to get the help needed to improve the

quality of life for his loved one. When the time comes to place the loved one in a dementia care

facility there are only two factors to consider: the physical and mental state of the caregiver and

the mental and physical state of the patient (HelpGuide.org). It is important to know the options

available to caregivers concerning AD loved ones. Today, there are dementia patient day cares.

These allow caregivers the opportunity to continue working. There are assisted living facilities,

small licensed residential care homes, dedicated Alzheimer care facilities and even nursing

homes (California Registry, 2009). It is important to look into the patient care the facility offers.

This way the caregiver knows that the quality of care will reflect the quality of life he desires for

his loved one, and he will not be trading his stress of caring for the loved one for the stress of

worrying over the ability of the facility to care for his loved one. Adaptation in the world of

Alzheimer’s is important for family members to understand. Taking on the caregiver role is a

difficult task that should not be taken lightly.

Conclusion

Alzheimer’s Disease is a progressive mental disorder. Family members who choose to be

caregivers to loved ones must understand just how difficult the task may be. This paper has

defined AD, and has given insight as to those who are impacted by AD, how they are impacted,

and the adaptations that must be met in order to cope with care of a loved one with AD. Today,

there are no known cures for AD, but there are treatments available that slow its process. Until a

cure is found, we as caregivers must be willing to adapt to the needs of our loved ones, and at the
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same time understand that there are other options available when we have reached our breaking

point.
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References

California Registry. (2009). Caring for Alzheimer’s Patients. Retrieved September 22, 2010

From: http://calregistry.com/resources/alz.htm.

HelpGuide.Org. (2007). Dementia and Alzheimer’s Care: Tips, Activities, and Long-term Care

Options. Retrieved September 22, 2010 from:

http://www.helpguide.org/elder/alzheimers_disease_dementias_caring_caregivers.htm

Mayo Clinic. (2010). Caregivers. Retrieved September 22, 2010 from

http://www.mayoclinic.com/health/alzheimers/AZ00030.

Medical News. (2009). Caring For Alzheimer’s Patients Proves Costly. Retrieved

September 22, 2010 from:

http://www.medicalnewstoday.com/newsid=167014.

Nia.Nih.Gov. (n.d.). Alzheimer’s Information. Retrieved September 22, 2009 from:

http://www.nia.nih.gov/Alzheimers/AlzheimersInformation/GeneralInfo/.

Northwestern University. (2002). The Family’s Response. Retrieved September 22, 2010

From: http://www.brain.northwestern.edu/patients/family.html.

Physorg.com. (2010). Friends, Family Detect Early Alzheimer’s Signs Better Than
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Traditional Tests. Retrieved September 27, 2010 from:

http://www.physorg.com/print204823644.html.

WebMD. (2009). Alzheimer’s Disease Guide. Retrieved September 22, 2010 from:

http://www.webmd.com/alzheimers/guide/caregiving-preparing-home?print=true.